Because we have had such a huge request for more tickets, we have also decided that we will be selling a limited number of tickets at the door on the night of the event. If you don’t want to risk not being able to get in, you can buy tickets at the link below.
Ronan. Somehow, life is still just going on without you. I’m not so sure how this just continues to happen, but it does. Right now, I am listening to the chitter chatter of your daddy and brothers as they root for the Raiders football team while watching the game in the other room. Poppy is sound asleep beside me and I just spent the entire day lost in her little coo’s and giggles. I catch myself a lot, stopping dead in my tracks after feeling myself feel the happiness she brings to my life. Happiness that exists without you here, but trust me, its not guilt free or the kind of happiness I used to have back when your little feet would go pitter patter across the floor. This happiness comes with a very heavy price that never goes away. This happiness, feels heavy as the absence of you is never far from my mind, heart, body, or soul. This happiness is heavy.
Your daddy just took your brothers to play basketball except Quinn who came in to tell me goodbye, decided not to go because he saw the tears rolling down my cheeks. The tears of this is all sometimes too much, the tears of all the other kids that I know who are going through this, the tears of the parent’s like us, who are left with a dead child due to this world that is a fucking crap shoot if you survive because it really is all just a game of Russian roulette. And when you lose, you lose big time. There are no do overs or second chances no matter how loudly you scream and cry and call out your dead child’s name at the top of a mountain because you think if you scream it loudly enough, he will come home. Not home as in fucking heaven, but home as in back into your arms, where your child belongs. Where you belong with me and should have been with me until I was the one old and dying, not you, young and dying while I watched you take your last breaths.
Every single day I take your brothers to school, I drive past the cutest little house with the most perfect little tire swing in the front yard. I crank my neck as far as it will go, to try to get a peek into this little world of the tire swing house. Sometimes, I see the mom coming out of it, pushing her other kids in the stroller. I think to myself, remember when I had the tire swing life. The memories of bliss come flooding in but are usually followed by hot tears as what once was, but never will be again. It takes me a minute to regroup and give myself the little pep that I often have to do. The one of you have x, y, and z and you need to be thankful for that which is such a bullshit pep talk. I know I have x, y, and z, but it does not make this pain, any less or any of this right.
Last week, I was taking your brothers to school and we were running late so I just dropped them at the cross walk. As I was slowly trying to navigate my way through traffic, a lady who was passing me motioned for me to roll down my window. I had never seen her before and just as I rolled my window down I heard her yell, “YOU GO GIRL! YOU KEEP FIGHTING CANCER!” This caught me off guard as well as made me laugh. You see, it’s moments like this when I am so caught up in my “I’m just a grieving mom role” when those little pushes and words of encouragement help me out the most. Sometimes I forget what I am actually doing because all I know is I’m just really, really sad and lost without you. But things like this help me to see that I must be doing something right for this stranger off the street to yell these words to me. I think I’m going to have a tee-shirt made up that say those exact same words, just to remind me that I am kicking ass and taking names and I can do this no matter how sad I might be.
This Friday night is our second annual Gold Party. Your Nana is coming into town as well as Macy, Rachel, Charisma, and your Fairy RoMo. It’s going to be such a wonderful weekend full of all of my favorite people. I am going to do my best to make it such a wonderful, sparkly night all for the sake of you. It’s always in my head that this party is for you, and for all the people who love and support this cause. This party is my way of saying thank you to all the people out there, who love you and are supporting all that we are trying to do. Although the reason for this party is sad and so beyond fucked up and wrong, I promise you that I will wear the biggest smile on my face for the night and hope that you are watching all that I am doing to try to make you proud. I love you so much little man and I will never stop screaming or crying for you. I promise to always try my hardest to make the wrongest things, somewhat right.
Alright little man, this is all I can do for tonight. I have been wiped out lately and my pillow is calling my name, even at this early hour. I miss you. I love you. I hope you are safe.
Ronan. Today is 28 months without you and it’s pouring down rain in AZ, naturally. You always bring me the rain when I am the saddest. I was up on and off through the night. Waiting for that 3:25 a.m. time when you left this world. I felt like screaming and throwing fists everywhere until I looked over at your Poppy sister who was sound asleep beside me. No screaming and crying fits allowed when a peaceful baby is sleeping beside you. I sent an email to Sparkly instead and screamed and cried to him. FUC. I hate cancer.
Dr. Sholler is in town. I took her hiking up Camelback last night. Holy hell it was hard as I have not hiked Camelback since I was about 8 weeks pregnant with your sister. It felt good though and we ended up totally making it a danger day since it was dark as we were coming down. That Dr. Sholler is such a badass that she was fine with it. We talked a lot about life, loss, this cancer world and how wrong it is. I like spending time with her as not only a doctor, but on a personal level as well. I’ve never met a doctor like her who just as passionate about her research, as she is the kids she is treating. She never forgets the faces behind this disease which is a big reason why I love her so much. She won’t ever forget your face and she never even got to treat you. One of my biggest regrets in all of this is that, but as I am learning, regrets in life will get you nowhere. It’s about moving forward and making the changes you can with the cards you are dealt. Even if it is the shittiest deck.
Our weekend was spent hanging around at home. Brianna and her girlfriend, Taylor who both just moved here to go to ASU, came over and stayed the night on Friday. Things like this that make me so happy, yet make me so sad, too. Your Brianna Boo, who loved you so much has finally moved here and we get to do such fun family things together, all while you are not here. I spent all Friday night and Saturday morning doing her laundry, your Daddy and I cooked her homemade meals, everyone went to your brothers basketball game, and I took the girls for mani/pedis, too. All while you are not anywhere to be found and I still have a hard time wrapping my head around this reality, our reality which I know is also the reality for so many others out there who are dealing with the loss of a child. It’s a reality that you never get to escape from or take a break from. It’s a reality that is a lot to carry around and the load never gets any lighter. But hey, thank you White House for saying NO to our little petition and thank you Empire State Building for also DENYING our application to light it up GOLD one day in September. So nice to know you will turn The Empire State Building Orange in honor of Nickelodeon on September 16th though. BARF.
Are you freaking kidding me?! This is an outrage and beyond insulting. Does anybody have any pull with the Empire State Building? Maybe if we all send in 5000 applications, they will listen. Here is the form if you so kindly, want to fill it out.
Today, I did my Skype interview for Emotional Mojo. I think it went well. I had a lot of fun doing it and one of the producers I’m working with, is awesome. I sent her a little email this morning, just to cover my bases. It went a little something like, “Hey CeCe! Can I cuss on air?” She replied back with something funny like “Noooooo! We are LIVE! If you cuss, you will be thrown into a black abyss and your message will not get out!” She told me to tape a sign to my computer that reminded me so cussing allowed so that is precisely what I did. Worked like a charm as no F bombs were dropped. They are going to check in with me every couple of weeks to see what it is that we are up to. I’m totally excited for this new little awareness outlet. I even rocked my red lipstick on air because we all know shit gets done when it’s a red lipstick kind of day. I’ll post a link when it goes up so you all can check it out. I hope I made you proud today, Ronan. I hope I make you proud everyday as making you proud is what I live to do.
It’s still pouring down here. After a very productive pow wow lunch with your Poppy sister in tow, I’ve decided throughout this journey, adventure, or whatever you might call it, I am still learning some very hard lessons. Lessons that are hard, lessons that are sad, lessons about how I need to be a little more protective of myself. Lessons about how people at the end of the day, do not have my best interest at heart. I feel let down, but I realize I have to take the higher road with some things and just let them go. I have too much darkness in my life already, and I do not need to be dragged down more. As I was told today, “If people are taking away from this cause, and taking away from what you are doing, because of your DEAD child, those people do not need to be in your life. They have forgotten the true meaning behind this and are taking advantage of your situation. You have to just let all of this go, because at the end of the day, we are here because of your dead son and anybody that takes away from that, is not worthy of being a part of this story.” Wise words from a wise lovie whom I should have listened to a long time ago. I have enough weight to carry around with me and at the end of the day I have no more energy left to take on others issues.
It’s days like today that I am just so fucking over the petty once again, BULLSHIT. Your Sparkly called me a few months ago and left me a voicemail telling me about a little girl he had just met and said something like, “You are a hero, you helped to save her life.” I listened to him go on about how a little girl came into the hospital and as he was treating her, this little girl’s mother, got to talking to him. She mentioned my name and told your Sparkly thanks to me, her daughter may end up being o.k. Nela’s mom started reading my blog about two years ago. Nela’s story started off much like ours. It all started with an “off looking eye,” where the doctors told Nela’s mom it was just allergies and she was over reacting. Nela’s mom said thanks to us and our story, she pushed and trusted her mother’s intuition and insisted on an MRI. The MRI showed a mass behind Nela’s eye and it turned out, Nela did not just have allergies. She has been diagnosed with Rhabdomyosarcoma, but luckily, it has been caught early, at Stage 1. Nela’s mom and I have been cooresponding via email messages and just lately, through text messages. I’ve been trying to set aside some time to meet up with her and to meet Nela, but things around here have been beyond slammed. I was coming out of my friend Katie’s kids store the other day and loading Poppy into the car when I saw a mom from across the street, carrying a little girl and she didn’t have much hair. I, of course did a double take as I always do in these situations now. She looked at me and said, “Are you Maya?” I said that I was and she introduced herself and Nela to me. I was a little caught off guard, but in a happy way. I’ve been really wanting to meet this family for a while now. We chatted for a few minutes and I ended up saying, “What are you two up to now? Do you want to come over?” It was so spur of the moment but she had actually been trying to meet up with me on that day, anyway, so it worked out perfectly.
Our new friends came over for about 45 minutes. I watched as Nela ran all about our house. The little thing had so much energy and seemed so happy. I listened to her mom tell me their story as I held on to your Poppy sister. She kept telling me thank you over and over again, even though she said she knows how I don’t like to be told, thanks. I smiled and told her I was happy I could help and if they needed anything, to please let me know. I only teared up after I watched Nela’s mom plop a big, fat kiss on the top of her sweet baby girl’s head. It was at that moment, that my heart sunk a little bit. Moments like that are always bittersweet for me. I am so happy Nela is here and is going to be fine, but gosh, how I miss kissing that sweet little head of yours. And then my mind goes to where you are now, all ashes in an urn. No more bald head to kiss, no more blue eyes to look into, no more hands to hold because they are burnt to a crisp. Is that too morbid? It’s my reality, try living with that every single day. It’s a wonder I am still here.
After our friends left, it was breakdown city. I held your Poppy sister and cried and cried and cried. Your Sparkly ended up calling and I told him, as I was bawling, that I was having a sad day. “I’m sorry,” he said. I miss him, too. C’mon, you have survived sadder days, you are going to be o.k.” I told him I knew as I tried to pull myself together. It didn’t work. I let myself cry a lot for you the next couple of days. All while I continue to fight on and go non-stop because cancer doesn’t sleep so why should I?
Ronan. As you can see, I started this days ago. I am exhausted tonight and I finally had a great run with my friend, Katie, tonight to get some of this angry energy out. I am finally starting to feel like I can get back into a good running routine and I have missed it so much. Tomorrow, we shall inferno hike. Tonight, we sleep.